sigh.....

This cheeky chap is my youngest son, Harry Llewelyn (named after two great Princes). He is going to be 9 years old on Friday and I can't believe how fast the time has flown.

Harry was diagnosed with autism a few years ago and has help at school. He struggles with language and communication and this doesnt just mean the spoken word, it covers social language, gestures, the unwritten code of conduct... He also struggles with change so any change in routine no matter how minor will affect his sleeping patterns and his behaviour.

So as his birthday approaches, I have had a testing time with Harry. His behaviour during these periods of unrest push me beyond comprehension. Today, I am struggling with a tension headache and feeling sick, my tummy is all knotted up.

I know that a birthday should be fun and eagerly anticipated. Harry doesn't really know when his birthday is, he still isn't sure when his party will take place and this confusion leaves him anxious.

So only a couple of days to go and hopefully the storm will have passed.

Restless Feet

I haven't been blogging regularly for a while and I have been thinking about this issue. I am extremely busy these days now that my energy is back and I don't have much time to sit down as I am constantly on the go and loving every minute of it, after all, I have alot of making up to do.

However... I am begining to feel like moving on from Cancer Aint Gonna Beat Me because I feel as though cancer is in my past. I had it, I kicked its butt and now its almost time to move on. Blogging on Cancer Aint Gonna Beat Me has been a blast but while I continue with this blog I feel as though I am being caged by cancer.

Don't worry, I am not leaving the blogging sphere! I still take part in the Friday My Town Shoot Outs www.fridayshootout.blogspot.com and I am in the process of starting a new blog www.sarasfightback.blogspot.com but I am having a few technical problems, trying to put badges on etc, I have forgotten how to do it. Once these hitches are sorted I will be moving over to that blog but don't worry, I will "tip you the wink" before I do.

Phew! So what has been going down in my busy life? I have been enjoying my pony Cola more than anything. He is my therapist and my personal trainer! I have lost half a stone in the last couple of weeks just by cycling to see to him, mucking out and lots of riding or walking. It is down to him that I have my strength and mobility back in my shoulder. He is the best thing that could ever have happened to me.

I had my teeth sorted out a week or so ago so now I have the smile I always dreamed of, three years of brace work and pain was certainly worth it in the end even though I had to delay the restorative work for a year.

The herceptin is going well, I have had 10 treatments so far so only have 8 more to go! My fingers are still swollen and my nails are flaking and splitting but that is such a small detail!

I am back to my support group Talk 4 Talk for parents of children with speech, language and communication problems and I am back in control. I have already found out about a service that my son can get access to in order to help with his reading. He is 9 next month and he still has the reading age of a reception pupil. I have told the school about the service he needs access too but as usual they are dragging their heels. Therefore I am putting my request in writing and copying it to the Local Education Authority and seeing as how it is election time, I may copy my letter to some MP's - yes! I am back in the driving seat!

I am looking forward to the Race for Life next month although my training has been hampered. I am still running and I can manage a mile but I have the rest of my life to get back to where I used to be and as long as I enjoy running then I will keep doing it.

So life is good, getting better and better with each day!

Almost a Week!

I can't believe that its almost a week since I last posted a blog! How quickly time flies now that I am feeling better!

Well not quite!

My nails are snapping and flaking and I have an infection in my right index finger. The infection has been there for almost a week now and it is getting better but so very slowly. Such a small thing but so much pain. I started to come down with a cold today so all in all, I feel pretty rough.

We managed to get Harry a new pair of riding boots. Buying clothes and footwear for him is so difficult because of his sensory problems, he feels every stitch, every label so it is difficult, very difficult. Anyway, he loves his new riding boots because he says that they are so soft inside.

The boys had a lesson off me in the menarge today. Boys includes Jason. They all did very well but its 30 years since I gave lessons or did any schooling or dressage but it is coming back to me slowly.

I went to the Breast Cancer Support Group meeting last night and was relieved to find out that swollen hands and feet seems to be a side effect of herceptin. Well I am half way through so at least it wont be forever.

I have been back on my weight watchers diet, eating well and concentrating on getting my B vitamins so I put spinach in everything..... Spinach in my soup, in my ghoulash, in my chilli..... you get the picture! I have been trying to snack on pumpkin seeds too which are high in iron. I must say that since my reiki and vitamin B supplements, things have got slightly better! My bloods all came back as normal but I dont know whether to be relieved or worried.

Apparently, the most critical time for re-occurance of breast cancer is the first 2 years after treatment. I suppose then, I am in the "comfort" zone because I will be having treatment until October 2010 so the clincher years will be Oct 2011 and Oct 2012!!! Nah!!! it aint coming back.

I went to look at a Shire x Cob with my friend on Bank Holiday Monday. He was lovely but had a pastern injury which showed. The owner assured us that it would improve with work but £500 was alot of money for a horse which really may not be used again. He was a darling though and if I could afford the upkeep of a second horse I would have made an offer myself because he would have been a good ride for Jason being slightly taller than Cola. Mac, my last horse had a bone spavin so I am used to horses with leg injuries.... As the old man by my school (Mr Jones) used to sing to me "kay Sera Sera, whatever will be will be"..... funny..... he would give me a sweet and ask me my name, I would reply "Sara" and he would sing that song.... same ritual every time....

Images are courtesy of Amazon.co.uk My 8 year old son is autistic, (aspergers) and he has trouble dealing with the world and its complicated ways. Sometimes this leads to anger and frustration and because he doesn't look as though he has a disability people are very condemning but they just don't understand.

I purchased these two books from Amazon UK to try and help Harry with his anger issues. There is no support available to us from the authorities despite the increased awareness of autism so we are very much on our own. I am very impressed with the Red Beast book and I think the only way I can explain it to you is to quote parts of the foreword:

"Any parent of a child with special needs will tell you that it is the uncontrollable outbursts of rage which are the most difficult to contend with"

"Some children with Autistic Spectrum Disorder ASD are prone to regular outbursts of rage, since simply living through a normal day is often fraught with anxiety and frustration. Children with Aspergers Syndrome seem to be the most affected because they are more self aware"

The book disassosiates the feeling of anger from the child themselves and instead calls it the Beast. In doing so it takes away the feelings of guilt and resulting low self-esteem.

This book is going to prove invaluable to me!

I wasn't too impressed with "When Sophie Gets Really Really Angry..." We could all identify Harry as Sophie but I didn't like the idea that when Sophie gets angry she runs away into the countryside. Children with autism mimic things such as stories or films etc, they also take things literally so this book could prove to be quite dangerous. I am quite sure that this book has its place but not for a child with autism.


It is very exhausting living with a child or children with special needs because you have to teach them everything, things which are normally learnt automatically. That coupled with the fact that they usually have communication dishorders makes it a very stressful environment.

I could write a book about my life with my boys. I am not saying it is all bad because it most certainly is not in fact the disability brings joy with it as well as strife!! You learn to become tolerant of their ways and life is spent "walking on egg shells" because the wrong word, the wrong look - can lead to a complete melt down. I have learnt an indirect approach works better with my children, a few half truths and ignoring alot. However, it is emotionally draining.


Mind you, I might find it hard parenting children with special needs but whenever I start to feel hard done to, I put myself in their shoes, I try to see the world through their eyes and to be quite honest with you I am in awe of them. They have adopted clever strategies in order to manage their situation but no matter what, the world is a scarey place when you are not sure what comes next. No wonder Harry wants to stay home all the time!

Sigh.......................

2009 was such an eventful year for me, although not in the way I would have liked so 6? 7? days into 2010 its all quite calm....

The children were kept off school yesterday because of the snow and they had a brilliant time outside playing! My neighbour, Fran and I made a snowman with the kids and that was good fun although when the light went later that day the older kids came along and took great delight in destroying it, that was sad!

The older kids are a source of frustration for all residents of our small cul-de-sac. They play football and the balls hit our cars and our houses... in the end, Jason had to go out with his warrant card and tell them officially that it was against the law to play ball games on a public highway, they just wouldn't listen to me! The parents never supervise the children, never have done, they seem to think its alright that they cause hundreds of pounds worth of damage to other peoples property. When my boys are outside playing, I plant myself in the window so that I can keep an eye on what is going on.

The same boys taunt the younger children, in fact, they run off with their bikes and earlier on in the year it was because of such an act that Harry (who takes great care of his bike) had his bike driven over! It's funny how quickly the older children disappeared, leaving Harry hiding in the shed having destroyed my pot plants in frustration, crying and shivering with distress.

Yesterday, the same boys taunted Harry again and the result was that he threw one of his new gloves into a tree and the other down the drain. I was then left to deal with the mess at home. By mess, I mean Harry's mood.

I had enough by 5.30pm, I had reached my melt down point because Harry is always challenging but he is growing up and so is challenging in a new way. I have to re-group and decide how I am going to deal with this, its not easy! Luckily my husband took care of the children and I took myself off to bed with my book just to chill.... I didn't read much, too emotionally exhausted but at least I did shake off my bad mood.

It is so hard dealing with children who have Speech, Language and Communication Disorders. Such small words really but they have a much deeper meaning, significance. It impacts on every aspect of life and learning... Going to the shop is never easy, going to the pantomine, anywhere outside the home...... I am sick and tired of parents at school putting a label on Harry as a "bad boy" because they haven't got a clue on what he has to deal with, or me for that matter!

I am so sorry, I didn't want this to turn into a whinging post but I have hit a rock in my life with this one. Its good in a way though because it shows that I am getting back to my old self after cancer but frustrating never the less.

I also feel that it is my duty to highlight the issues of this dishorder and that of autism. So many people look at my beautiful boy and just do not realise what he has to live with.

Promise me that if you see a child swearing, lashing out, lieing on the supermarket floor, fiddling with buttons or belts..... you won't condemn that child or his parents. You will smile at the parent, you will smile at the child and you will say a prayer for them.

Review of the last decade....

Somebody mentioned a review of the decade on facebook and I decided to blog about things which have meant something to me, personnally. You will probably find alot of it boring, but it is theraputic for me! They come in no particular order.

I had the car of my dreams, my MINI COOPER - our first ever brand new car

I was diagnosed with Stage 3 Breast Cancer

I fought and beat Stage 3 Breast Cancer

I beat depression in 2008 following therapy with a brilliant guy Dave Atkinson and for the first time in my life, accepted myself

I beat my disordered eating pattern

I lost all my hair!

I gave birth to my second son Harry Llewelyn in May 2001

9/11 and the aftermath

My son was diagnosed autistic and I fought for years to get help for him and I eventually did!

I re-trained as a dog groomer

I set up and ran a successful part time business as a dog groomer for 4 years until cancer struck

I have had my hair long, short and bald!

I learnt how to blog and opened up a whole new world of friendship

Tony Blair got kicked out of government - sadly, not before he did the country alot of damage

The unnecessary war in Afghanistan and loss of so many livesI met HM the Queen and Prince Philip when they visited Wrexham. What a charming couple!

I did the Race for Life in 2008 - my first ever race

I got back together with my dad

I started running seriously

I made a Digital Story about Harry to help teach those in authorities how hard it is for children like him

I got my eldest son through his "issues" and at the age of 9 he actually ate Pizza (mixed up food)

The list is endless but to sum it up... it has been a difficult decade for me in lots of ways. I have battled and conquered disordered eating and depression. I have had two children with special needs and I have dealt with them successfully. If they hadn't had me as a mum, they would be prisoners of their own disorder. I have battled cancer and come out the other side. I lived for 3 years with virtually no sleep because Harry was such a troubled sleeper. Despite it all..... I am HERE and I am ready, just ready to make the next decade count.

Pantomine Fun

- REVIEW: Llandudno panto is Strictly stunning This is one of the reviews about the pantomine we went to see yesterday!

For those followers of Strictly Come Dancing, you will appreciate Craig Revel Horwood and some of the jokes in the show!

Thank you to my mother in law, Margaret who arranged this Boxing Day treat for us. I thoroughly enjoyed it. We had good seats, Margaret made sure of that and the show was spectacular. The costumes were a joy, the jokes were so funny, the dancing and singing was great....... The only thing that spoilt it a bit for me was having a Harry with me who doesn't have a great attention span. He kept asking "when do we go home" and yet, whenever thunder struck or the wicked witch came on stage..... he was mesmorised! Panto experiences with a child with autism require patience.......

How Do We Solve a Problem like My Harry?

I have had to focus on myself this last year. I have had to somehow get through cancer treatment and get to the end of the year. I have done it! However, during this time I have not been able to be as hands on with my sons, especially Harry who is autistic and has communication difficulties. I was always pro-active with Mr H and always watching him but after the months I have had, I have distanced myself. I have had to, otherwise I just couldn't have coped.

Both my kids have had so much to deal with aside from their difficulties. They have seen their mum worried, scared, sad, angry, seen the effects of surgery, chemotherapy and radiotherapy. They have seen my hair fall out and re-grow. What a difficult situation for "normal" kids.

Harry is having difficulty coping with his emotions at the moment and it is becoming a growing problem as he hurts others which is not acceptable. I am worried sick that he will grow up to be in constant trouble. I think this has been a big contributor to why I have been so depressed this weekend.

I bought the book "Volcano in my Tummy" a couple of years ago but like alot of strategies it wasn't right for Harry at the time. Now he is older, I am going to be using this book to teach him about his anger and how he can manage it without hurting others.


I have just spent £30 with Amazon on a selection of other books about anger and dealing with it in a more positive way. I won't bombard Harry with the books but will use them to drip feed the message. I will bring school on board with my plan so that it can be further re-inforced there.

Lets hope these books work! I have already used others similar to this "Is It Right to Fight" etc with great success.

I will let you know how we progress!

Being a mum is the hardest job I have ever done but the most rewarding. Sometimes though, I just wish..... I just wish with all my heart that I could have had a more "average" or, dare I say it? "normal" experience of parenting.

Today I am Negative

Today is a BLUE day for me! I am feeling depressed. Sorry if you are hoping for a cheery and positive post today because it isn't going to happen.

My hormones are all over the place, I understand this. The drugs I am on are playing havoc with my system and I am still recovering from chemotherapy and its side effects.

I am a positive person, I try my best to be kind to people, always have a smile on my face but sometimes its all too much.

My way of dealing with bad things in my life is to put them in a box and close the lid on them. Every now and again, the lid is opened and I am overwhelmed with the enormity of everything and this is how I am feeling today.

I am sick and tired of the hands I get dealt in life. Nothing is easy, everything I ever have comes with a huge price tag.

I am so angry that I lost my big brother Peter. Life would have been so much better if he had lived and I wouldn't have to see the loss in my mums eyes. I am fed up with the fact that my other condition (other than cancer) had played havoc with my body all my life, leaving it hard to have children. Miscarriage, years of fertility treatment..... Do you know what its like to live each month in hope and each month your dreams are dashed and you grieve again and again and again....

Then when I have children they are riddled with colic and not only that, they have speech, language and communication difficulties. If you see a child in a wheelchair you can see the disability but with my boys it is hidden. You can't begin to understand what living with this disability is like, what it is like to be a parent of a child with this condition.

Then I get breast cancer......... Life SUCKS BIG TIME!

Why me?

I don't want to look the way I look either. Overweight... hair too short... scars all over my body. I feel like a reject....

Life is Amazing!

(Click on images to enlarge)

Christmas always awakens a whole range of emotions for me. I love Christmas, don't get me wrong, its got to be the best time of year, I love it but I do get swamped with alsorts of feelings and emotions and occasionally I feel overwhelmed.

I saw my eldest son Joseff perform his last ever Christmas play in primary school. I have known all of his classmates since they were babies and it was so strange seeing them up there on stage performing their hearts out. The picture above is of me and Joseff, I think he was only a few weeks old in the picture. When he was born, I considered myself the luckiest person in the whole world. I had been on fertility treatment for years and had almost given up hope of having children when he came along.

Joseff had his Christening in Gresford Parish Church on 27th December 1998 aged 10 weeks old. From left to right: Julie, Angela, Me & Joe, Jason, Amanda & Kieran and Karl.

Keiran is now a strapping young man!

I can't begin to describe how exhilerated and wonderful I felt when this photo was taken. Joseff had only just been born and I couldn't wait to get him back in my arms again. He was born in the early hours of the morning following just 2 hours of labour. We both went into shock but he was born safely just as the doctors arrived. I remember going onto the ward with him and just staring at him for hours.

Harry didn't like Father Christmas when he was 2 years old. He just wanted to grab his present and go! I love this photo so much! I wish I had known about his condition then, maybe I would have considered the impact of Father Christmas a little more and been a bit more sympathetic to his very real fear.

Harry loved Buzz Lightyear, he was his favourite toy for a long time until eventually he did actually fall apart. I remember clearly the day he preteneded to be Buzz in Dodleston Park. He was on a climbing frame, about 4ft in the air when I saw him press his imaginary button, make all the right sounds before his jump..... Luckily we got to him in time and disaster was avoided. Harry always gets into character when he is playing, he BECOMES the person he is playing which sounds cute but not when it involves flying, jumping and other dangerous activities.





This time of year I think about my loved ones. Dear Peter, forever 25. Last night I watched the Royal Variety Performance on TV and Bette Midler performed "Wind Beneath my Wings". I cried my heart out because I used to play that after Peter died, it says everything about how I felt about him because he was my heroe I used to idolise him.

Today is the 20th anniversary of my Nains death. She was a remarkable lady, with a beautiful face, equally beautiful smile and a twinkle in her eye.

Life is pretty amazing really. Yes, I have lost loved ones tragically, yes I have been through fertility treatment and miscarriage, I have children with speech & communication difficulties and one who is autistic and I have just battled breast cancer. However, each of these situations has made me the person I am today. I am proud and so glad to have been able to know my Nain, I am so lucky to have had such a devoted big brother in Peter. No matter what the ever lasting pain of their loss has inflicted on me, it was worth the honour and privelage of having them in my life. I am lucky to still have mum and dad in my life and a lovely little brother, Gareth not to mention my Auntie Heather and Uncle Phil.

So.... against all odds, I have it all. I wonderful husband and two glorious boys. I have fought cancer and will continue to do so because I intend to be around for many years to come. Life has so much to offer and I am currently just deciding what I am going to do with it. There was a time that I dreaded feeling this happy because something always happened to snatch my happiness away..... I don't think anything will happen this time, I have a feeling in my heart.

My plans for the future include practicing Reiki, running to raise money for cancer research and autism, opening a dog grooming salon and God willing..... becoming a Nain x

My Adopted Word is...... HAMSTERS

Actor: Stephen Fry supporting I-Can's "Adopt a Word" Scheme

Both of my children have had, have "speech, language and communication" problems. They have received therapy at different levels and still have professional input in their lives.

When I was baptised into the realms of SLCD it was a complete shock for me. I have always been an excellant communicator, indeed, my apraisals regularly commended me for "being able to communicate on all levels..." what this meant was, as my job as a buyer I was able to speak to production line workers and company directors alike, achieving my objectives with success.

I got good grades in English Literature and English Language, I have always loved to read and write so this disorder was a culture shock.

One cannot imagine how awful it is not to be able to communicate. This is how it affects you;

1. You don't "get" the subtle jokes

2. You can't express how you are feeling

3. You have great ideas in your head but you just cant make people understand[

4. You know what you mean, why doesnt anyone else

Oh, I could go on and on and on.......

I have adopted the word "hamsters" because my boys hamsters, Penny and Blossom are important to them. Their hamsters understand them without question and they understand their hamsters.

As an adoptive "parent" of the word hamsters, I have to exercise the word on a regular basis. So fellow bloggers, look forward to hamsters appearing on my blog now and again.

Transitions

The pub in Glyn Ceiriog - our favourite place (not the pub but the actual village)

When I was growing up, one of the many pieces of advice given to me by my mum was.... "in life, you have to be like a tree which bends in the wind. If a tree stood rigid, it would snap, learn to bend....". I have always followed this advice, adapting to change really well and not being too bothered by it.

This week, I have found myself to be snappy, irritable, naggy....... Why? I ask myself. Then I realise that I am at a transitional phase of my cancer treatment. On Thursday; the 19th anniversary of my big brothers death; will be my last dose of chemotherapy. After 12 rounds of chemo over six months, I will be glad to kiss goodbye to that phase in my life. I then move onto the next stage which I haven't thought about much, the radiotherapy and it scares me. However, like every aspect of cancer treatment you have to put on that "stiff upper lip" and soldier on..... It is rather like fighting a war with cancer. One mission is soon to be accomplished then on to the next and the next and the next until peace can be declared once more!

So, having never been phased by transitions before, I am surprised that I find myself feeling the way I feel at the moment.

This thought leads to another thought.

This time it is with autism and those with communication problems. Transition is hard for them as their security lies in routine and mundane daily grind. I now know what it feels like to be my child...... I now understand just how hard life is for them, dealing with situations that I have taken for granted all of my life. Simple changes in routine such as going to school a different route, a school play instead of the usual work.... all these tiny tiny little things that we all take for granted because we are ABLE to bend in the wind.

Cancer has taught me so much in life...... Mainly.... not to take ANYTHING for granted, be it transitions, being able to adapt to change, my family & friends, my life........ I am also able to discard the unnecessary and the unwelcome and focus on what matters.

Transition.......... Bring it on!!!!!

My New Wellies

As you all know, I was missing my boys this morning as they went to school today. I went to the hospital to get my bloods done. I was so nervous because my veins feel like pencils, they are so hard and it hurst. I told the nurse doing this and, bless her heart, she took the blood from a slightly different place and under the skin. The result was that it didn't hurt, just a prick like the old blood tests used to be before breast cancer. People like this through their kindness make such a huge difference to our lives.

After I got my bloods done I decided to go to the Country Store to look for some new wellies. I did buy some pretty pink, flowery ones but they weren't too comfortable for walking in. My last pair of Huntresses went a few months back because after years of use, the soles had worn thin. I managed to purchase a nice pair. Traditional green as before although now you can get them in all sorts of colours; red, blue, pink, purple. I think green is good.

I got some mince for tea and make a spagetthi bolonase (wrong spelling I know), something that the boys would enjoy!

Picking up time at school and right on schedule, the heavens opened! Always at 3pm if it is going to rain, it will rain then! Luckily, I was met by smiling faces. Harry informed me that I needed to go and see his teacher but "it wasn't bad". She seems to think that Harry may have eye sight problems because he is squinting when he works. Eye test duly booked.

Dental checks after school - all ok! Sweets from sweet shop as promised this morning and home. So far..... (touch wood)...... no melt downs!

Now Harry has found the biggest spider in the house and has made a box to put him in. I have told him "NO" Fred is a house spider and he doesn't want t live outside. He is now sitting next to me saying "If you love Fred, you don't love me..." "I wanted to keep him in the box..... no HARM would happen..." Poor Fred, he may become a casualty of meltdown. I hope not, I rather like him. Distraction tactics required.....

Bereft!

That is exactly how I feel at this precise moment in time...... bereft! My boys have gone back to school after a 6 week break. Jason loaded them into the car and off they went.

Joe was struggling with his worries because the teacher he had last year was as much use as a chocolate fireguard! She did not challenge the children at all. This year, he is having a young male teacher who is strict and will be preparing them for High School next year. He struggles with school because although he has not been diagnosed as autistic, he presents many characteristics of the spectrum.

Harry on the other hand is autistic. He was worried because he is struggling to read and write. He asked me this morning if he would be allowed to go to high school if he couldn't read or write and would his support teacher go with him? It is three years off yet!!!

As a parent of children with special needs, my heart bleeds for them. School is difficult for any child but for one who had communication problems (and I mean that broadly) and sensory difficulties, school is a hell on earth. To accomplish one piece of work takes 100% more effort than it does for peers, this is why they get so tired and so angry with school and nobody but me seems to understand or care.

Communication affects every aspect of ones life from forming friendships, maintaining friendships, expressing oneself.... the list goes on and on. Its not just verbal. How frustrating to be expected to understand everything and yet not. Imagine you are in a foreign country with their own language and customs....... just think about it for a moment........ THAT is what it is like for an autistic child every single day of their lives.

So as well as chemo this week, I am going to have to deal with "melt downs". The term is used when the child is so tired, so frustrated, so confused, so over loaded that they have tantrums similar to those of a toddler. I will have to be ready to restrain, I will have to prepare the house to make sure there are no dangerous tools around or precious things which can be broken or lost.

Don't get me wrong, I love my boys, they are the best; kind, caring, funny... but parenting them for almost 11 years has been difficult beyond belief; dealing with violent tantrums, OCD issues, sleep problems, self care problems...... oh dear.... where do I end the list? I was given my boys as a gift from God, when I thought I would never become a mum, He gave them to me to care for. He knew I could deal with the challenge and He knew I would love them unconditionally and fight for their welfare. I have risen to the challenge. I do worry about this confounded breast cancer though, when I was diagnosed, my thoughts were with them and how they would cope without me. However, I would not change them for the world because they are who they are and they are mine and I am not going anywhere.... they will see me when I am old and grey!

So today, I am feeling bereft because my little boys have gone to school.

Steroids and Placebos

I managed to get about 2 hours sleep last night. Lay in bed for a while then was joined by H-Bomb who was still upset about his upset before bed and needed a cuddle. Cuddles were duly given and once he was in a slumber, I got up and read for a few hours. Morning came just as I had slipped into a deep sleep and it was time to make school sandwiches and pack bags.

I did try to sleep again but these steroids seem to be glued to my system so I have just pushed on. The sun is shining and it was too nice to waste in frustration. Jason and I took the dogs for a walk and that was really enjoyable. I played with my lovely neighbour Oliver, met his baby tortoise "Gilbert" and helped to de-matt their cat "Moomin" with my professional clippers newly purchased before my cancer diagnosis!

Last night, Harry was in tears before bed time. He found me lieing in bed and asked for a cuddle. He then asked me for a back tickle but I told him that my arms and legs were weak at the moment and my tummy hurt. After about 10 minutes he burst into tears (however, he was peeping behind his fingers) and proceeded to tell me that he always felt sick before and after food ever since he was sick in school just before Christmas. I did get his tummy checked out but he was ok.

Being autistic and having sensory issues, I cannot rule out the fact that he does experience sensations which are more severe than "normals". For example, socks and pants have to be purchased regularly because once they lose their softness they are too harsh for his skin. Socks have to be worn inside out because the seams inside irritate. I am fed up with buying clothes that never get worn because they are tight or rub. It is a sensory issue.

Harry and I are tuned into each other. As a baby, he would never sleep and I existed for 3 years with no sleep with him. As a result I was depressed and stressed and he picked up on that. He would never sleep for me but put him in the arms of someone else and he was off like a light. He plays up and his melt downs are more frequent when their are changes in routine such as the end of a school year, Christmas and the start of a new year. He had similar situations before my operation and before my first round of chemo....

This leads me to think that maybe, Harry is having "sympathy" pains, I know my mum has told me that she has. It is funny that he picked up on my poorly tummy which is what I mainly suffer with through chemo. So.... the old tried and tested method of placebos! I will purchase a bottle of vitamin syrup from the pharmacy, ask Glenn to put it in some prescription bags then I will tell him that the doctor has prescribed it for him. It worked just after Christmas and it will possibly work again.

However, I will be booking a doctors appointment for him just to rule out any possible underlying causes but I am positive my placebo will work!